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Ladybug's Pax-hell Journey

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ladybug

Well I have always had some sort of anxiety my whole life. Of course, nowhere NEAR as bad as the anxiety WD has caused me. I missed school a ton growing up cause it just made me anxious to be around a lot of people and I was very shy. Just the thought of having to go to school gave me a nervous stomachache. This led to me actually dropping out for a while in high school. Thankfully I was able to enroll in an alternative high school with very small classes where we could go at our own pace and make our own hours. I was able to graduate and get my diploma in under 2 years.

 

I've also had OCD for as long as I can remember. I was tormented by my intrusive thoughts and thought there was something very wrong with me or I was possessed. When I was around 11 or 12 I was looking in a psychology book for some answers and when I read the description for OCD I had a Eureka moment. "That's me!" I was so happy I started crying. So I guess I diagnosed myself but it was later confirmed by a child psychologist.

 

Around 1998 (when I was 18 years old) is when I started seeing commercials on TV for Paxil. Again, when I heard the description I thought it sounded a lot like me. I had just been broken up with by a guy for being "too shy". I was hating how reserved I was and my "social anxiety." It had been getting even worse as now I was getting very nervous and racing heart when in restaurants or standing in line at the store.

 

So I went to a psychiatrist and told him I wanted this drug, Paxil. After a LONG questionnaire and hearing my symptoms he agreed it might help me. I asked him if I could stop taking it any time I wanted and he said "Yes." LIE. That was the day I made the worst decision of my life and I will always regret taking that first pill.

 

So I started the Paxil at 20mg and had no start up effects that I can remember. A few months later I took a trip by myself on a bus half way across the country. So I gues the Paxil was "working." I also missed a couple of doses and that is when I found out about the horrible WD. Zaps, crazy sensitivity to noises, nausea, etc. It scared the crap out of me. Felt like I was stuck on this poison.

 

The years start to pass and I begin to become numb to everything. I gain 30 pounds, which doesn't sound like much but on someone 5'2" with a small frame it definitely shows. Although I was in a relationship I became more and more disinterested in sex. My favorite hobby was sleeping. I had zero ambition and zero motivation.

 

In 2002, my BF at the time finally convinced me to try to get off this drug. I started taking 2.5mg drops every month or so from 30-40mg (cant remember exactly). As I got lower my interest in sex returned and I felt good. I decided to go on birth control. Two weeks after starting it I crashed completely. I was at about 10mg of Paxil at that time. One morning I woke up to nausea, some vomiting, a horrible burning sensation everywhere in my body, horrible anxiety, and the dreaded akathisia which was by far the worse symptom.

 

I became suicidal and made an emergency appt. with a psychiatrist (not the one who initially prescribed it) who talked to me for 15 minutes and said this was proof I needed to be on the drug for the rest of my life. She proceeded to up my dose back to 30mg. I slowly started to feel better and the experience was enough to scare me away from attempting to taper off for several years.

 

In Dec. 2006 after I get out of that relationship I feel something needs to change in my life. I was very unhappy with who I was. So I once again start to taper from 37.5mg. In 2008 I make it 20mg and decide to take a break. I go out with friends, I drink ALOT. Sleeping, smoking pot, eating, and drinking alcohol are my favorite activities. The break lasts for a whole year.

 

In 2009 I commence my taper, but I notice it's getting a lot harder, which would make sense since besides the crash in 2002 I have never been on a dose lower than 20mg. I have to reduce my drops to less than 5%. At around 15mg in Aug. 2009 I get a part time job I love but I'm so scared of having WD at work that I take even smaller drops. In a year at that job I drop about 3mg.

 

In 2010 I start to have stomach problems and anxiety increases. I have to stop eating red meat completely as I notice it makes my stomach problems worse. I carry a bottle of Pepto Bismol in my purse with me everywhere I go. Stomach problems give me anxiety and vice versa so it's a vicious cycle. Finally in Aug. 2010 I'm spending most of my time at my job in the bathroom so I decide to quit the best job I ever had. Probably just as well as about a month later is when the crap really hits the fan.

 

In late September I take a 4% drop from 11.8 to 11.4. I get a little depression after about a week. Two weeks after that I try to eat a bit of red meat and visit the website of someone I used to know and it makes me very anxious. Several hours later I begin to feel very nauseous and anxious. I finally make myself throw up and feel a little better. I sleep a lot the next two days. The day after that however I stop sleeping completely. My anxiety goes into overdrive. I have no appetite and can't eat. I feel shaky, and depressed. My brain has forgotten how to sleep all of a sudden although I have never had insomnia in my entire life previous to this. If I do pass out it is for less than a hour. For 9 days I sleep one hour every 3 days. I see weird cartoony things when I close my eyes. I hear things that I know are not there. Once I had an awful bloody image flash into my mind out of nowhere when trying to fall asleep that "woke me up" with a gasp.

 

I try everything over the counter: Benadryl, herbal sleep pills, melatonin, valerian. Nothing works. Finally someone gives me some Xanax and Trazadone. I take .50mg of Xanax and 25mg of Trazadone. Instead of sleeping one hour I sleep two. The next day I am more groggy than the night before and I am FINALLY able to sleep 5-6 very broken hours. I also updose to 12mg. I start to feel a little better but this doesn't last long. Three weeks later my stomach starts acting up again and I am unable to sleep. Not only am I unable to sleep but now every time I am about to fall asleep my body violently jerks awake. It is torture.

 

I decide to start dropping again. I find I feel a little better after a drop but it doesn't last long. I start to drop every 3 weeks. The depression is still so bad cause I don't know what's wrong with me and my body keeps jerking awake, usually all night. I become suicidal and try to suffocate myself one night. Then I realize, I DON'T want to die. I just don't want to keep living like this. By the grace of God I make it through. I lose about 15 pounds in 4 weeks.

 

I guess this brings us up to present, fifteen months after that "rough patch" or "mini crash". I still have no idea what caused it. The jerks are still here and still drive me insane but thankfully they have weakened and are not as relentless (usually) as they used to be. My sleep has never been the same since. I take magnesium and melatonin every night to sleep.

 

If I get even slightly stimulated good or bad I am unable to sleep. Even going out with friends stimulates me too much and I am unable to sleep. I can't exercise for even 10 minutes cause it makes my jerks worse. I am still not working. I have found it has gotten even harder under 10mg. I have gone from tapering every 3 weeks to every six weeks. From 4% drops to not even being able to do 2.5% drops.

 

I taper .1mg every 6 weeks. At this rate it will take me 6+ years to get to off if I can at all. I read on the other forum about someone who was going as slow as me and she STILL crashed at 6mg. I'm very hopeless. I am so freaking sensitive to drops and can't imagine how I will ever get off this poison. It has been three years since I started tapering from 20mg and I'm not even close to being off.

 

I'm too scared to switch to Prozac because of all the horror stories I've heard and the fact that it is notoriously activating. If I try to hold on a dose longer than 7 weeks I feel very bad. I feel like I'm damned if I do and damned if I don't. Really don't know how to proceed and if I will ever get my life back.

 

I am 31 now and would very much be able to have kids someday. I'm single and have been for a long time cause I can't even go out anymore and meet people. When I do go out, I don't sleep like I said. So that's it.

 

Thanks if you took the time to read this LONG, LONG introduction. I pray for all you guys and I hope you will pray for me too. XX

Edited by scallywag
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Claudius

Ladybug that is a very VERY sad story! And one I can relate too, unfortunately. Have been a prisoner of this horrific drug by myself for many years, went off c/t to get all the awful symptoms you describe.

I am sure Altostrata will chime in soon. I can also tell you about someine I know from a Dutch forum, she was also extremely sensitive to w/d. She learend from me about the suspension and the 5-10% rule but she did it even smoother: she took off 0.1 mg of her dose each 3 days or so. For some people even 5% can be to hard. And I am the first to believe that, afer many attmpts to quit, you are more hooked to it than ever before.

I know this is very scary nut I really hope you will make it out, at least you have found the best site on the Web to support you.

By the way, you psychiatrists, both of them, are not worth to be called doctors and should be withdrawan from their posistion immediately. But in fact this counts for 99% of the psychiatrists because the whole pseuso-specialism is built on lies and misleading.

Hang on and probably there is still a way out, albeit a slow and bumpy one.

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Lor95

Hi Ladybug my friend.....

Thanks for posting your whole story...I feel I know you a little better now.

I pray for me and I pray for you - every day. We are very much in the same boat.

Lotty

xxx

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Altostrata

Hello, Ladybug. Thanks for joining us.

 

It looks like you've reviewed your options and realize they're limited. David Healy has recognized there are some people who have great difficulty reducing by even very tiny amounts.

 

Prozac is not necessarily activating. The risk is reduced by switching to a very low dose, for example, 5mg.

 

The challenge is finding a doctor who is acquainted with this technique.

 

We're rooting for you. Hang in there.

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bruno2016

Well I have always had some sort of anxiety my whole life. Of course, nowhere NEAR as bad as the anxiety WD has caused me. I missed school a ton growing up cause it just made me anxious to be around a lot of people and I was very shy. Just the thought of having to go to school gave me a nervous stomachache. This led to me actually dropping out for a while in high school. Thankfully I was able to enroll in an alternative high school with very small classes where we could go at our own pace and make our own hours. I was able to graduate and get my diploma in under 2 years.

 

I've also had OCD for as long as I can remember. I was tormented by my intrusive thoughts and thought there was something very wrong with me or I was possessed. When I was around 11 or 12 I was looking in a psychology book for some answers and when I read the description for OCD I had a Eureka moment. "That's me!" I was so happy I started crying. So I guess I diagnosed myself but it was later confirmed by a child psychologist.

 

Around 1998 (when I was 18 years old) is when I started seeing commercials on TV for Paxil. Again, when I heard the description I thought it sounded a lot like me. I had just been broken up with by a guy for being "too shy". I was hating how reserved I was and my "social anxiety." It had been getting even worse as now I was getting very nervous and racing heart when in restaurants or standing in line at the store. So I went to a psychiatrist and told him I wanted this drug, Paxil. After a LONG questionnaire and hearing my symptoms he agreed it might help me. I asked him if I could stop taking it any time I wanted and he said "Yes." LIE. That was the day I made the worst decision of my life and I will always regret taking that first pill.

 

So I started the Paxil at 20mg and had no start up effects that I can remember. A few months later I took a trip by myself on a bus half way across the country. So I gues the Paxil was "working." I also missed a couple of doses and that is when I found out about the horrible WD. Zaps, crazy sensitivity to noises, nausea, etc. It scared the crap out of me. Felt like I was stuck on this poison.

 

The years start to pass and I begin to become numb to everything. I gain 30 pounds, which doesn't sound like much but on someone 5'2" with a small frame it definitely shows. Although I was in a relationship I became more and more disinterested in sex. My favorite hobby was sleeping. I had zero ambition and zero motivation. In 2002, my BF at the time finally convinced me to try to get off this drug. I started taking 2.5mg drops every month or so from 30-40mg (cant remember exactly). As I got lower my interest in sex returned and I felt good. I decided to go on birth control. Two weeks after starting it I crashed completely. I was at about 10mg of Paxil at that time. One morning I woke up to nausea, some vomiting, a horrible burning sensation everywhere in my body, horrible anxiety, and the dreaded akathisia which was by far the worse symptom. I became suicidal and made an emergency appt. with a psychiatrist (not the one who initially prescribed it) who talked to me for 15 minutes and said this was proof I needed to be on the drug for the rest of my life. She proceeded to up my dose back to 30mg. I slowly started to feel better and the experience was enough to scare me away from attempting to taper off for several years.

 

In Dec. 2006 after I get out of that relationship I feel something needs to change in my life. I was very unhappy with who I was. So I once again start to taper from 37.5mg. In 2008 I make it 20mg and decide to take a break. I go out with friends, I drink ALOT. Sleeping, smoking pot, eating, and drinking alcohol are my favorite activities. The break lasts for a whole year. In 2009 I commence my taper, but I notice it's getting a lot harder, which would make sense since besides the crash in 2002 I have never been on a dose lower than 20mg. I have to reduce my drops to less than 5%.

 

At around 15mg in Aug. 2009 I get a part time job I love but I'm so scared of having WD at work that I take even smaller drops. In a year at that job I drop about 3mg. In 2010 I start to have stomach problems and anxiety increases. I have to stop eating red meat completely as I notice it makes my stomach problems worse. I carry a bottle of Pepto Bismol in my purse with me everywhere I go. Stomach problems give me anxiety and vice versa so it's a vicious cycle. Finally in Aug. 2010 I'm spending most of my time at my job in the bathroom so I decide to quit the best job I ever had. Probably just as well as about a month later is when the crap really hits the fan.

 

In late September I take a 4% drop from 11.8 to 11.4. I get a little depression after about a week. Two weeks after that I try to eat a bit of red meat and visit the website of someone I used to know and it makes me very anxious. Several hours later I begin to feel very nauseous and anxious. I finally make myself throw up and feel a little better. I sleep a lot the next two days. The day after that however I stop sleeping completely. My anxiety goes into overdrive. I have no appetite and can't eat. I feel shaky, and depressed. My brain has forgotten how to sleep all of a sudden although I have never had insomnia in my entire life previous to this. If I do pass out it is for less than a hour. For 9 days I sleep one hour every 3 days. I see weird cartoony things when I close my eyes. I hear things that I know are not there. Once I had an awful bloody image flash into my mind out of nowhere when trying to fall asleep that "woke me up" with a gasp. I try everything over the counter: Benadryl, herbal sleep pills, melatonin, valerian. Nothing works. Finally someone gives me some Xanax and Trazadone. I take .50mg of Xanax and 25mg of Trazadone. Instead of sleeping one hour I sleep two. The next day I am more groggy than the night before and I am FINALLY able to sleep 5-6 very broken hours. I also updose to 12mg. I start to feel a little better but this doesn't last long. Three weeks later my stomach starts acting up again and I am unable to sleep. Not only am I unable to sleep but now every time I am about to fall asleep my body violently jerks awake. It is torture. I decide to start dropping again. I find I feel a little better after a drop but it doesn't last long. I start to drop every 3 weeks. The depression is still so bad cause I don't know what's wrong with me and my body keeps jerking awake, usually all night. I become suicidal and try to suffocate myself one night. Then I realize, I DON'T want to die. I just don't want to keep living like this. By the grace of God I make it through. I lose about 15 pounds in 4 weeks.

 

I guess this brings us up to present, fifteen months after that "rough patch" or "mini crash". I still have no idea what caused it. The jerks are still here and still drive me insane but thankfully they have weakened and are not as relentless (usually) as they used to be. My sleep has never been the same since. I take magnesium and melatonin every night to sleep. If I get even slightly stimulated good or bad I am unable to sleep. Even going out with friends stimulates me too much and I am unable to sleep. I can't exercise for even 10 minutes cause it makes my jerks worse. I am still not working. I have found it has gotten even harder under 10mg. I have gone from tapering every 3 weeks to every six weeks. From 4% drops to not even being able to do 2.5% drops. I taper .1mg every 6 weeks. At this rate it will take me 6+ years to get to off if I can at all. I read on the other forum about someone who was going as slow as me and she STILL crashed at 6mg. I'm very hopeless. I am so freaking sensitive to drops and can't imagine how I will ever get off this poison. It has been three years since I started tapering from 20mg and I'm not even close to being off. I'm too scared to switch to Prozac because of all the horror stories I've heard and the fact that it is notoriously activating. If I try to hold on a dose longer than 7 weeks I feel very bad. I feel like I'm damned if I do and damned if I don't. Really don't know how to proceed and if I will ever get my life back. I am 31 now and would very much be able to have kids someday. I'm single and have been for a long time cause I can't even go out anymore and meet people. When I do go out, I don't sleep like I said. So that's it. Thanks if you took the time to read this LONG, LONG introduction. I pray for all you guys and I hope you will pray for me too. XX

 

Since you are here in Houston i was wondering if you have been able to do any counseling? I use Family Services Center and they can help you with many things including case management and help with getting a vehicle if you need one. Even though i am still struggling, I have found it helpful to talk with a therapist who can use empathy to help me. I feel good knowing that nothing last forever, even this horrible state we are in. There is always a way out, always another day. as Alto said, prozac may not be necessarily activating and we all respond differently. I know your nervous system is very sensitive, but this may be another option you have.

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ladybug

Hi Ladybug my friend.....

Thanks for posting your whole story...I feel I know you a little better now.

I pray for me and I pray for you - every day. We are very much in the same boat.

Lotty

xxx

 

Hi Lor, good to hear from you. Thank you so much for your prayers and I think about you and keep you in my prayers every day as well. You have come incredibly far and I am so proud of you. You will be surpassing me in no time!

 

Hello, Ladybug. Thanks for joining us.

 

It looks like you've reviewed your options and realize they're limited. David Healy has recognized there are some people who have great difficulty reducing by even very tiny amounts.

 

Prozac is not necessarily activating. The risk is reduced by switching to a very low dose, for example, 5mg.

 

The challenge is finding a doctor who is acquainted with this technique.

 

We're rooting for you. Hang in there.

 

Yes, I have definitely not ruled out the Paxil option completely. There is an option that I find interesting that I think Dr. Glenmullen discusses in his book "The Antidepressant Solution". In this taper method, instead of switching from one to the other, you add in a small dose of Prozac while still tapering the Paxil at your own pace. I find it very interesting but have never heard of anyone who has tried this method.

 

Since you are here in Houston i was wondering if you have been able to do any counseling? I use Family Services Center and they can help you with many things including case management and help with getting a vehicle if you need one. Even though i am still struggling, I have found it helpful to talk with a therapist who can use empathy to help me. I feel good knowing that nothing last forever, even this horrible state we are in. There is always a way out, always another day. as Alto said, prozac may not be necessarily activating and we all respond differently. I know your nervous system is very sensitive, but this may be another option you have.

 

I am uninsured and have the gold card. Through them I saw a psychiatrist who talked to me for less than 15min (and this was when I was doing much worse) and sent me home with a prescription for Atarax (an antihistamine) and no request for follow up. He also said Paxil is harder to WD from than Effexor, when I have heard quite differently. I also saw a counselor twice there and she told she had never seen someone who had WD WHILE tapering the drug, only after. But she didn't deny that it was happening to me. I told her about the AD WD forums and she asked me the name and wrote it down and said she would take a look at it. Even so I can't say I felt she "knew what she was doing." Which is kinda ridiculous since I didn't talk to her for very long. I might make another appt. with her. I am definitely going to look into Family Services Center, thanks for that!

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Altostrata

There's a lot of debate over whether Paxil or Effexor is the most difficult to taper. It's a tossup. They're both horrible.

 

The counselor didn't know you can get withdrawal symptoms while withdrawing? Hmmmm, indicates her knowledge is very poor.

 

Dr. Glenmullen has some good suggestions.

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Barbarannamated

 

The counselor didn't know you can get withdrawal symptoms while withdrawing? Hmmmm, indicates her knowledge is very poor.

 

Interesting. Some believe symptoms can't happen AFTER w/d. Others think it can't happen DURING withdrawal. Maybe they need to talk to each other.

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bruno2016

 

Hi Ladybug my friend.....

Thanks for posting your whole story...I feel I know you a little better now.

I pray for me and I pray for you - every day. We are very much in the same boat.

Lotty

xxx

 

Hi Lor, good to hear from you. Thank you so much for your prayers and I think about you and keep you in my prayers every day as well. You have come incredibly far and I am so proud of you. You will be surpassing me in no time!

 

Hello, Ladybug. Thanks for joining us.

 

It looks like you've reviewed your options and realize they're limited. David Healy has recognized there are some people who have great difficulty reducing by even very tiny amounts.

 

Prozac is not necessarily activating. The risk is reduced by switching to a very low dose, for example, 5mg.

 

The challenge is finding a doctor who is acquainted with this technique.

 

We're rooting for you. Hang in there.

 

Yes, I have definitely not ruled out the Paxil option completely. There is an option that I find interesting that I think Dr. Glenmullen discusses in his book "The Antidepressant Solution". In this taper method, instead of switching from one to the other, you add in a small dose of Prozac while still tapering the Paxil at your own pace. I find it very interesting but have never heard of anyone who has tried this method.

 

Since you are here in Houston i was wondering if you have been able to do any counseling? I use Family Services Center and they can help you with many things including case management and help with getting a vehicle if you need one. Even though i am still struggling, I have found it helpful to talk with a therapist who can use empathy to help me. I feel good knowing that nothing last forever, even this horrible state we are in. There is always a way out, always another day. as Alto said, prozac may not be necessarily activating and we all respond differently. I know your nervous system is very sensitive, but this may be another option you have.

 

I am uninsured and have the gold card. Through them I saw a psychiatrist who talked to me for less than 15min (and this was when I was doing much worse) and sent me home with a prescription for Atarax (an antihistamine) and no request for follow up. He also said Paxil is harder to WD from than Effexor, when I have heard quite differently. I also saw a counselor twice there and she told she had never seen someone who had WD WHILE tapering the drug, only after. But she didn't deny that it was happening to me. I told her about the AD WD forums and she asked me the name and wrote it down and said she would take a look at it. Even so I can't say I felt she "knew what she was doing." Which is kinda ridiculous since I didn't talk to her for very long. I might make another appt. with her. I am definitely going to look into Family Services Center, thanks for that!

 

Family Services is income based services and if you dont work, you dont pay or pay a very small feel like $5 or $10 dollars. I referred my friend to them and she said they asked her one time if she was interested in being referred to a doc for meds and she said no and they respected that. So, as far as I am concerned, this place is not like the other drug pushing people and hopefully you can get some good benefits by using their services.

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ladybug

Hello everyone, I'm back and in a bad place again. I had been doing better since the last time I posted probably because I slowed my taper down even more to where I was only tapering .1mg every 8 weeks. 8 weeks seemed to be the longest I could hold, because if I held longer I would start to feel worse. When I dropped I would start feeling better until it was 8 weeks again. Of course I would have some bad days, usually around my period. I went back to school and was doing great.

 

My last drop was to 6.5mg. About 5 weeks into it I had either some low blood sugar or a slight migraine attack, not sure. I got shaky, a bit confused, bad derealization, followed by headache and nausea. I had a similar episode a couple of months before which doctor said was likely a migraine and not a mini stroke. I had never had a migraine before that. That first episode was worse, and it took me a couple of weeks to feel back to normal but I did. This time it's different. This attack wasn't as bad as last time, but I haven't felt right since. Bad derealization, anxiety, loss of appetite (have lost 6-8 pounds in less than two weeks!) I had one night with all night adrenaline rushes and anxiety that was bad, but I've been able to sleep a bit better since then (Thank God!). So am I crashing or what? What can I possibly do? I can't hold. I can't updose since last time I did it really didn't seem to work for long. I'm too terrified to switch to another AD although I do have an appt. with a new psychiatrist tomorrow. I don't even know how I'm gonna make it there, The derealization makes driving a scary experience and I feel so much more anxious in public. But I have no choice, I am out of Paxil and need a prescription and have no one else to drive me there. So what options am I left with?

 

P.S.:I should mention I have been having a lot of fatigue and hair loss so I got my thyroid tested twice recently. The first time my TSH was .60 which is on the overactive side of normal, and I had it retested three months later and it was at 4.93 which according to my lab is hypothyroid. I'm hoping this latest rough patch has to do with my thyroid but I've read too many scary things about thryoid meds that I'm not sure I should try it when I'm already in such a vulnerable place. Two days ago I cut out gluten in hopes that would help some. Too early to tell.

 

Please help!

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Meimeiquest

Ladybug, how did your dr. visit go? I am certainly no expert, but my guess is that you have something physical going on, either caused by or contributing to WD. Teasing it out is the trick..have you had a full thyroid work up? The TSH is at best only the beginning of an assessment to my understanding. I think a gluten-free trial is good for anyone. Casein is often an issue for people who are sensitive to gluten. Good luck, and let everyone know how you are doing!

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ladybug

Ladybug, how did your dr. visit go? I am certainly no expert, but my guess is that you have something physical going on, either caused by or contributing to WD. Teasing it out is the trick..have you had a full thyroid work up? The TSH is at best only the beginning of an assessment to my understanding. I think a gluten-free trial is good for anyone. Casein is often an issue for people who are sensitive to gluten. Good luck, and let everyone know how you are doing!

It went ok. The psychiatrist was very kind, but had little to offer me. She said she could prescribe me Abilify or Seroquel which might help with the anxiety while tapering, which I of course refused. She actually commented "Well it sounds like you're damned if you do, and damned if you don't." Haha, no kidding!

 

I'm currently wating to get an appt. with my doctor and I hope he will order a full thyroid screen so we can get a clearer picture of what may be going on.  Unfortunately, the gluten-free only lasted a few days. It's just so restrictive and can be expensive. I feel like it's not worth it unless I know for sure I have a problem. I mentioned it to the psych and she said it didn't sound like I had it because I didn't have the common symptoms like loose bowel movements and rash. I told her that I read that 20% of Celiac or gluten intolerant people have constipation, not diarrhea. I will mention it to my doctor next time. I might try it again in the near future, but right now I've got so much stuff going on, I don't need anything else to worry about. Thank you for your advice! I'm going to try to stay on this dose until I can see what's going on with my thyroid. I hope I can!

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Meimeiquest

Proud of you for getting out of the office without a new script, given how you feel!

 

I have never had any GI symptoms. But gluten is probably a battle for a better day. Really hope you can find some answers soon!

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Altostrata

Coincidentally, I just found out that complex carbs are important to keeping blood sugar steady and cortisol down, particularly in those early morning cortisol spikes.

 

If going gluten-free has caused you to drop complex carbs from your diet, you may wish to add some in, especially in the evening. Legumes are a good source. I like split pea soup myself.

 

Agree with meimei, see an endocrinologist and get a full thyroid workup.

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lexicon

Thinking of you ladybug,

I am saddened that you are going through this distress ..

Hoping that it will get better for you ..Once you find that you are stable,

you will be able to reach the end to this ordeal.

Hang in there, and try tiny steps ..

We are suffering now, but everyone finds wellness at the end.

Praying that things will level out for you, and that you can find relief

and peacefulness.

Love, Lexi

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ladybug

Thinking of you ladybug,I am saddened that you are going through this distress ..Hoping that it will get better for you ..Once you find that you are stable,you will be able to reach the end to this ordeal.Hang in there, and try tiny steps ..We are suffering now, but everyone finds wellness at the end.Praying that things will level out for you, and that you can find reliefand peacefulness.Love, Lexi

 

Thank you so much.  :) To update, I have found that taking 500mg of Inositol seems to help all these symptoms I've been having about 75%. It's incredible. Still trying to hold on at 6.5mg but may try to drop .001g soon and see if it helps at all.

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ladybug

Been on this dose almost 13 weeks now. Well I made a .001g drop a week ago to see if maybe it would help any and it didn't. I feel I am slowly getting worse. I don't know if I should keep holding or what. Please tell me is there anyone at all that feels worse the longer they hold? I thought that was a possible symptom of poop out but I have seen people here on meds much longer than me who feel better on a hold. Could it be all in my mind that I feel worse when I hold too long? I'm too scared to drop and scared of getting worse when holding. I'm at a standstill. :(

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ladybug

Also, I've been unable to get a full thyroid workup because I had a bad reaction to getting blood drawn, and a couple of weeks after is when all this began, so now I'm terrified to get blood drawn again. I would have to take some Valium or something I'm sure, but I hesitate to do that too because part of me wonders if this latest wave could possibly be due to taking small amounts of Valium a few times a month for a while. I've been Valium free for 6 weeks now. I was only taking 1.25mg 2-3 times a month.

 

I was doing so well only a few months ago, and now this. Wish I knew what to do.

 

My doctor won't cooperate with me on the thyroid thing either, he thinks I am stupid to request additional tests. He thinks the TSH is all that matters. Everything I read online says this is NOT the case. I got him to order Free T3, Free T4, and TPO antibody test but that's all he would do, and he left out a new TSH test! He prescribed me Synthroid based on my elevated TSH and fatigue and hair loss symptoms, but I would rather not take it unless I have antibodies that would prove that my thyroid is being attacked. Even then I've read that Synthroid is stimulating and can make anxiety much worse, which terrifies me since it's already bad. I read this is the case when you have low iron and low vitamin d, BOTH of which I have. I have gotten my iron up to almost normal, but ferritin is still low. I try to take Vitamin D3 but it makes me anxious, even at low levels. Man, I feel screwed. Sorry to ramble. Any advice welcome!

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Altostrata

I believe it's pretty well known you need to look at free T3 and free T4 before prescribing. Perhaps you need a new doctor.

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Nikki

Coincidentally, I just found out that complex carbs are important to keeping blood sugar steady and cortisol down, particularly in those early morning cortisol spikes.If going gluten-free has caused you to drop complex carbs from your diet, you may wish to add some in, especially in the evening. Legumes are a good source. I like split pea soup myself.Agree with meimei, see an endocrinologist and get a full thyroid workup.

 

Alto do you mean to have the complex carbs at dinner to help with morning cortisol dumps?  Or have a high protein dinner?  Can you elaborate a bit.

 

Thanks

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Altostrata

Complex carbs at dinner may help with the wakenings in the middle of the night, if they are caused by low blood sugar adrenaline dumps.

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ladybug

Can somebody please answer my original question? What do you do when you can't taper any slower? I have been around 6.4-.6.45 for 17 weeks and I'm not getting better, only worse. Anxiety keeps escalating, depression, suicidal ideations. Sleep has gone to hell for the past month. Some nights nothing, some nights a few broken hours. 30 minutes Friday night, and two very broken hours last night (guesstimating.) I feel totally hopeless cause I don't know where to go from here. Should I keep holding, should I drop, should I attempt to switch? Please, someone advise.

 

I was fine on 6.45mg for six weeks and something destabilized me I guess. Whether it be the vasovagal reaction or hypoglycemic attack I don't know, but I've steadily gotten worse since then.

 

Are there no answers left for me?

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alexjuice

Change your diet, that's what I'd do if I was in your shoes especially if you are having hypoglycemia. I might try a high vegetable and lean meat diet with no sugary foods for a couple of weeks. Nobody ever died from eating a lot of vegetables w/ lean meat for a couple of weeks, so far as I know. I think the result would have great diagnostic value in helping to discover what will work for you long term. For instance if you make this dietary change and feel worse then that will tell you a lot too so no matter what happens, unless you stay exactly in the hellzone, it will be beneficial.

 

Good luck. I know you can do it!

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alexjuice

Also I feel much better when I take a couple of activated charcoal supplements. I am able to sleep or fall back to sleep and my anxiety recedes substantially. It's not a cure but it helps with the symptoms.

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kaza31

hi there ladybug

 

I was reading your posts, just wanted to ask with regards your thyroid was there any progress?

 

I have been having trouble with my own thyroid..

 

my blood test for my thyroid this past six months were coming back tsh  at 4, then 4.6, then 6... I had all the symptoms of fatigue, heavy/achy eyes, dry scalp/body/hair, nails breaking, could not sleep at night, weight gain.. just feel very ill in general.. my doctor kept saying my tsh was only slightly high so I didn't need any meds..

 

finally two weeks ago I had enough, I made another doctor appointment as I couldn't cope with the fatigue any longer, my neck was very painful, I also felt like even my breathing was very slow and I was yawning all the time like my body was needing more oxygen in, it was very strange.. thank god my own doctor was off sick that day, I had a replacement lady doctor that day...

 

so this lady doctor ordered another blood test for tsh,t3 and t4.. I went back in a couple of days later and she said my tsh was 10 and my t3 and t4 were out of range... she then told me I had to go for a blood test for my antibodies and she was sending me for an ultrascan for my neck to check what the lump is..

 

she couldn't believe that my own doctor hadn't listened to me before this, when my symptoms and blood results proved I was hypothyroid..

 

I was put on 25mcg of levothyroxine and have to go back in in six weeks to recheck my bloods.

 

so far I have been on them for two weeks, I haven't seen dramatic improvements yet, however I do feel im sleeping better, the night sweats have reduced, plus the achy feeling in my eyes isn't as bad.. I hope to feel some more improvements in the next couple of weeks..

 

I also have low vitamin d3 this past two months and am taking meds for it, plus previous to that my iron was low and I had to take supplements for it, very similar to your story..

 

I have noticed the levothyroxine has worsened my anxiety or withdrawal symptoms etc.. however currently I a m making a hold on my reduction of meds until I get my thyroid under control and I start feeling a better better in myself..

 

all the best

K

 

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Altostrata

Merged ladybug's topic from Tapering into this one, as it is about her current situation.

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ladybug

Wow, I had forgotten I had a journal here. Well from my very first Feb 2012 post to my July 2013 things were actually going pretty darn good. I went back to college in Fall 2012. From Fall 2012 to Summer 2013 I went to school full time, made straight A's and made the Dean's List all three semesters. I was going out, and living as normal as I could. I was doing better than I ever did on even a full dose of Paxil.  My biggest problem was I would have anticipation insomnia. Whenever I had a presentation, meeting, or appointment I would not sleep at all the night before. I wasn't anxious at all, just couldn't fall asleep.

 

I felt like I finally might be turning the corner, which is why this current rough patch is so disheartening. Now I feel like it's pretty much guaranteed that I will have a hellish WD that is going to take several years to heal from if I even make it out alive. I really don't know where to go from here, but I'm only getting worse.

 

I suppose I will try another drop and if I get worse go back up. My last drop was so miniscule, it's possible my body didn't even register it. I use a scale and we all know the fluctuations that happen with a scale. I can weigh a pill one day and it's .112g and weigh it a few days later and it's .115g. The drop I took was .001g. I basically went from .113g to .112g. Before that I had been dropping by .002g. I could still feel these tiny drops. I would start to feel bad at 8 weeks on a dose, drop .002g and start feeling better after a few days. I would have a few days of increased anxiety, but that's about it. That was my pattern for about a year until all hell broke loose recently.

 

Wondering if it's possible that I wasn't dropping enough and hit some sort of tolerance? I have only dropped about .3mg this entire year. Slowest taper in the history of tapering! I wonder why Rhi, who has been on drugs much longer than me would be able to hold and feel better yet I can't? There is no rhyme or reason to this crap. Very scared of the future right now, and rue the day I ever started this poison!

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ladybug

hi there ladybug

 

I was reading your posts, just wanted to ask with regards your thyroid was there any progress?

 

I have been having trouble with my own thyroid..

 

my blood test for my thyroid this past six months were coming back tsh  at 4, then 4.6, then 6... I had all the symptoms of fatigue, heavy/achy eyes, dry scalp/body/hair, nails breaking, could not sleep at night, weight gain.. just feel very ill in general.. my doctor kept saying my tsh was only slightly high so I didn't need any meds..

 

finally two weeks ago I had enough, I made another doctor appointment as I couldn't cope with the fatigue any longer, my neck was very painful, I also felt like even my breathing was very slow and I was yawning all the time like my body was needing more oxygen in, it was very strange.. thank god my own doctor was off sick that day, I had a replacement lady doctor that day...

 

so this lady doctor ordered another blood test for tsh,t3 and t4.. I went back in a couple of days later and she said my tsh was 10 and my t3 and t4 were out of range... she then told me I had to go for a blood test for my antibodies and she was sending me for an ultrascan for my neck to check what the lump is..

 

she couldn't believe that my own doctor hadn't listened to me before this, when my symptoms and blood results proved I was hypothyroid..

 

I was put on 25mcg of levothyroxine and have to go back in in six weeks to recheck my bloods.

 

so far I have been on them for two weeks, I haven't seen dramatic improvements yet, however I do feel im sleeping better, the night sweats have reduced, plus the achy feeling in my eyes isn't as bad.. I hope to feel some more improvements in the next couple of weeks..

 

I also have low vitamin d3 this past two months and am taking meds for it, plus previous to that my iron was low and I had to take supplements for it, very similar to your story..

 

I have noticed the levothyroxine has worsened my anxiety or withdrawal symptoms etc.. however currently I a m making a hold on my reduction of meds until I get my thyroid under control and I start feeling a better better in myself..

 

all the best

K

Yes, I think I have read it's very common for people with hypothyroidism to have both low iron and low Vitamin D. I certainly have both. I am trying to gather the courage to my blood work done, I wonder if hypothyroidism could be the cause of this recent trouble.

 

I just wonder why my TSH would swing from .60 to 4.9 in only 3 months. With Hashimoto's thyroiditis, your immune system attacks your thyroid which causes it to leak thyroid hormone into your bloodstream which in turn causes hyper symptoms like insomnia, heart palpitations, and anxiety. I certainly have all three of those. So you can swing between hyper and hypo many times, which could be an answer. 

 

I am very scared to take levothyroxine as I keep hearing it makes WD worse. That is good that at least you are on large enough dose in your meds that it's not causing too many problems. I feel at my low dose it might cause me to crash completely. I seem to sensitive to hormones. My first crash in 2002 was after I started birth control pills. I have been taking melatonin for years though, and that's a hormone. It does jack squat to help me sleep though, I'm just afraid of dropping it altogether. I take .50mg. Was up to 2mg at one point, but tapered down when I was sleeping better. Even though my insomnia is currently at its all time worst, I hesitate to go back up on it. I have heard long term melatonin use can lower thyroid function and I always wonder if that was a contributor as my TSH levels were fine a few years ago.

 

Please keep me updated on how the levothyroxine is working for you. I know getting your levels right and finding the right dosage can be a long journey. Please let me know when you get your TPOab test results back. This is the test I am most interested in for myself as the presence of TPOab points to Hashimoto's.

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Nikki

LB your wd fro paxil reminds me of a friend in the UK who did the smallest possible cuts over a very long period of time.  She used Rescue Remedy (Bach Flowers) for anxiety.

 

As a result her taper was very successful in that she was okay when it was over.  She was so worried it wouldn't, so she kept the last of her paxil for fear of having to go back on a miniscule dose.  She never had to.

 

What she did was hold for long periods of time and her drops were almost immeasurable, particularly towards the end.

 

The inosital helps the anxiety which is great.  I may have to get some...............

 

Paxil is hard to get off of and you seem to be doing the right thing.

 

Hugs

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ladybug

LB your wd fro paxil reminds me of a friend in the UK who did the smallest possible cuts over a very long period of time.  She used Rescue Remedy (Bach Flowers) for anxiety.

 

As a result her taper was very successful in that she was okay when it was over.  She was so worried it wouldn't, so she kept the last of her paxil for fear of having to go back on a miniscule dose.  She never had to.

 

What she did was hold for long periods of time and her drops were almost immeasurable, particularly towards the end.

 

The inosital helps the anxiety which is great.  I may have to get some...............

 

Paxil is hard to get off of and you seem to be doing the right thing.

 

Hugs

Well I seemed to be doing well for a long time, but I feel now I am crashing. I thought you couldn't poop out while tapering. I am terrified the drug has stopped working completely. I have seen that happen to a couple of people and I couldn't handle it if that is what is happening to me. I am down to 102 pounds, I can't sleep more than 2 broken hours a night. Last night I caved and took Valium for the first time in over two months, hoping it would give me some more sleep but it didn't. It was a small dose though, 1.25mg but that's what I would usually take. Every time I did manage to fall asleep I wake up with awful anxiety and burning skin. I just keep getting worse and don't know what to do. May have to make an appt. with a psychiatrist and let them experiment on me.

 

I stopped taking the Inositol a long time ago. Maybe that was what started this whole mess. It resensitized my receptors and causes all hell to break loose, I don't know.

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kaza31

hi there ladybud

 

this past few nights Ive started having the sleeping trouble again.. every time I would try to fall asleep I would awaken with a jerk, I would waken up sweating like mad.. my chest feels heavy like anxiety...

 

I got my result back from my thyroid antibody test on wednesday and it came back my antibodies are high.. im scheduled in for a ultrasound on the 23rd of October for the thyroid.. I also have a doctor appointment for next week to discuss the antibody results etc.. She thinks I must have Hasimitos thyroiditis like you did mention..  One thing she advised me was to start a gluten free diet as this has been known to help decrease the number of antibodies which are produced..

 

My neck were the thyroid is is so sore at the moment, there is a hard lump and it just aches...

 

initially after starting the levothyroxine I had slept good for a few nights, still woke up few times but felt I slept better..

 

though this week my sleep is dreadful..

 

I just don't now if this is all because of the the fact I might need I higher dose of meds as 25mcg is not enough, and Im still getting major hypothyroid symptoms, is it the hashimotos , or it is still withdrawal from my reduction from Effexor down to 87mg on the 6th September..

 

it all is so confusing... all I know is I just feel so unwell and im fed up with it..

 

( on a side note,,, with regards tsh, my doctor told that the medical books state tsh should be between 0.5 and 5.0, however in her opinion for our thyroid to be working efficiently and our body to feel better she said it should be between 1.0 and 2.0) also my t3 and t4 were out of range..

 

you said your tsh was 4.9 which going by what she states is high even though medical books say that to be normal.. therefore It would suggest hypothyroidism.. however because it increased so much from 0.9 to 4.9 in three months it could also be hashimotos..((just my own opinion))

Mine went from 6.6 to 10 in four months 

 

Did you ever get your t3 and t4 checked or your antibodies test??

 

Im very grateful that this lady doctor finally knew something was going on with me.. there is nothing worse than feeling so ill and no one is listening to you and you feel so helpless..  I really hope you get it sorted..

 

Let me know how you get on

 

All the best

K x

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kaza31

sorry I meant ladybug ooops lol

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ladybug

hi there ladybud

 

this past few nights Ive started having the sleeping trouble again.. every time I would try to fall asleep I would awaken with a jerk, I would waken up sweating like mad.. my chest feels heavy like anxiety...

 

I got my result back from my thyroid antibody test on wednesday and it came back my antibodies are high.. im scheduled in for a ultrasound on the 23rd of October for the thyroid.. I also have a doctor appointment for next week to discuss the antibody results etc.. She thinks I must have Hasimitos thyroiditis like you did mention..  One thing she advised me was to start a gluten free diet as this has been known to help decrease the number of antibodies which are produced..

 

My neck were the thyroid is is so sore at the moment, there is a hard lump and it just aches...

 

initially after starting the levothyroxine I had slept good for a few nights, still woke up few times but felt I slept better..

 

though this week my sleep is dreadful..

 

I just don't now if this is all because of the the fact I might need I higher dose of meds as 25mcg is not enough, and Im still getting major hypothyroid symptoms, is it the hashimotos , or it is still withdrawal from my reduction from Effexor down to 87mg on the 6th September..

 

it all is so confusing... all I know is I just feel so unwell and im fed up with it..

 

( on a side note,,, with regards tsh, my doctor told that the medical books state tsh should be between 0.5 and 5.0, however in her opinion for our thyroid to be working efficiently and our body to feel better she said it should be between 1.0 and 2.0) also my t3 and t4 were out of range..

 

you said your tsh was 4.9 which going by what she states is high even though medical books say that to be normal.. therefore It would suggest hypothyroidism.. however because it increased so much from 0.9 to 4.9 in three months it could also be hashimotos..((just my own opinion))

Mine went from 6.6 to 10 in four months 

 

Did you ever get your t3 and t4 checked or your antibodies test??

 

Im very grateful that this lady doctor finally knew something was going on with me.. there is nothing worse than feeling so ill and no one is listening to you and you feel so helpless..  I really hope you get it sorted..

 

Let me know how you get on

 

All the best

K x

No, I am so sick with WD at the moment I have been unable to get my blood checked. I should have had it done weeks ago when I was feeling better than this at least.

 

A high antibody count definitely points to Hashimoto's. I have also heard that a gluten free diet is good for Hashimoto's. You should also consider supplementing with 200mcg of Selenium daily as this has been shown to lower antibody counts as well.

 

25mcg of Synthroid is a very low dose, and you will no doubt have to go higher than that, but it is best to start slowly and go up. Definitely work on getting both your iron and Vitamin D to optimal levels because if they are low your body will be unable to utilize the synthetic thyroid hormone effectively. What does your doctor think about natural dessicated thyroid hormone such as Armour Thyroid or Naturethroid? From everything I have read they are much better than Synthroid because Synthroid only has T4 whereas natural thyroid meds have T4 and T3. Your body is supposed to convert T4 to T3 but not everyone does this efficiently. I've learned a lot from Thyroidboards.com and Stopthethyroidmadness.com. You might want to check those out.

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Zoe

Prayers & hugs for you ladybug!!!

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ladybug

Prayers & hugs for you ladybug!!!

Thanks, Zoe! I appreciate it. ((HUGS))

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ladybug

Well I got my test results, and now I'm even more confused as they seem to be in the normal range.TSH: 2.51 (0.36-3.74 uiu/ml)Free T3: 2.69 (2.18-3.98 pg/ml)Free T4: 1.33 (0.76-1.46 ng/dl)Why is my TSH all over the place?.60 in March4.97 in June2.69 in October

 

Any advice from people knowledgable about thyroid issues would be greatly appreciated. They were supposed to test my TPOab, but since I haven't received the results I'm worried they left it out! That was the one I was most concerned with too.

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